Tag Archive | hydrocephalus

Little Miss Minion: Volume 5

Yesterday was Little Miss Minion’s fifth birthday! I can’t believe it has already been five whole years since she was born.

Since we couldn’t have a regular party like we normally would have, the plan was to have a Yes Day and try to meet up with people on Zoom to sing happy birthday. Mr Minion took the day off from work and went out to get donuts for breakfast. After that, she got herself dressed in her Snow White dress and watched tv. She got bored of Snow White after a while and decided to be a pirate princess instead. About an hour later, it was time for Snow White again. Around noon, we had a special visitor—Nurse J from the NICU!

Little Miss Minion had requested a steak dinner, so we happily obliged and Mr Minion grilled some of the best steaks I’ve ever had. After dinner, we fired up the computer and Zoomed with friends and family to wish her a happy birthday and sing before she blew out her candles.

After cake and such a busy day, she was full of energy (and sugar), so we went for a walk in full Snow White regalia, plus a new Frozen baseball hat. I’m sure the neighborhood wasn’t expecting a Royal parade. 🙂

Today was a rude awakening, as Princess Minion realized that it was no longer her birthday and she had to do her normal daily things, like pick up after herself and not have cake for lunch. She’s so deprived.

Little Miss Fishy

In an effort to get Little Miss Minion (and me) some social interaction, we decided to sign her up for swimming class. She’s in the preschool group, where they mostly focus on getting the kids to feel comfortable in the water. Her group consists of her and two other kids. The other two are bigger than she is (what else is new?) and more experienced in the water. At one point, she decided to go sit on the stairs and watch, but I talked her into going back over to the group. Her teacher really helped-I think she realized LMM was nervous, not just being stubborn. About five minutes later, she was splashing and picking up diving rings (they were in the kids section, so the water ranged from zero inches deep at the beach ramp walk in to like two feet at the far end). They also did boogie boards, where the kids hold the board and kick while the teacher pulls them around. They practiced floating, which I was sure LMM was going to pass on, but she did it. They also practiced jumping into the water while holding the teacher’s hands. I didn’t think she’d do that either, but I was pleasantly surprised. I was fully expecting her to refuse to go in this time, since the pool is a new place for her and I was over in the parent area. Every time she did something, she’d look over at me and beam–the biggest smiles ever. It was adorable.

While I was getting her dried off and dressed for the ride back home, she asked me if we could come back tomorrow. I think she likes it.

Happy New Year!

On New Year’s Day last year, we started The Jar. I cut up some paper into little slips and found a pen. The Jar, the slips of paper, and the pen sat on the counter in our kitchen all year. Whenever we remembered to do it, we would write down something memorable that had happened and planned to read all the slips on New Year’s Eve. We went to bed last night at like 10, so we read them this morning. It was pretty cool to see all the things we wrote down throughout the year. Little Miss Minion even snuck one in without us knowing!

Highlights:

Getting cleared for another year from LMM’s neurosurgeon.

Going to a cool Halloween tour at a historical house near us.

I got promoted in the spring. And again in the fall.

Taking LMM to the Home Depot projects.

Planning our cruise to Alaska.

My A in Microbiology. And my A in Anatomy and Physiology I.

Date nights with Mr Minion.

Baking zucchini bread with zucchini from our garden.

Theon Greyjoy Memorial BBQ.

Putting Christmas lights on the house.

2019 was a pretty good year. I have high hopes for 2020.

Now I have to go get The Jar ready for a new year of memories.

Another Semester Down

The fall semester of 2019 is in the books and I came out with another A! Anatomy and Physiology I was tough, but interesting. The best part is that I think I can reuse my book for the spring (A&P II). I know I can use the other half of my coloring book and flash cards.

The end of this semester also brings me to the halfway point of my return to school. I’ve been taking classes for 2 1/2 years now and I’ve got 2 1/2 left, assuming I get into nursing school this fall. I have the grades and the classes done-I am scheduled to take the HESI in January and then I can apply to nursing school in March.

In other news, Little Miss Minion had her first false alarm shunt incident at the beginning of the month. She’d been complaining of a headache off and on for several weeks, so we talked to her neurosurgeon. He wanted us to come in, since it had been going on for so long. One MRI later, he told us that her scans looked ok and whatever it was wasn’t shunt related. The bright side of this little adventure is that LMM hasn’t complained of a headache since then. The bad news is that this added a new, rather large bill to our “tab” at the hospital. We’re still paying off her surgery from October 2017! If our NICU and hydro journey has taught me nothing else, it’s that medical bills can be paid monthly and financial aid is a lifesaver.

In happier news, it’s almost New Years Eve! That means we get to open The Jar from 2019. At the start of this year, I took an empty mason jar and put it on the kitchen counter, along with a pen and some small slips of paper. The idea was to write down memorable, funny, cool, or happy moments throughout the year and then read them all together on New Year’s Eve. I’ll have to share some once we open the jar.

I hope everyone had a great holiday and I wish you all the best in 2020!

Prematurity Awareness Day 2019

Wear your purple today in honor of Prematurity Awareness Day!

There are so many lasting effects of premature birth that it’s hard to list them all. Not only do you have the ones that make themselves known around birth (low birth weight, breathing assistance, etc), you have all the things that could happen in the NICU (blood transfusions, surgeries, infections, caffeine, TPN, PICC lines, specialists, etc). Then you can have all the things that happen after the NICU, like early intervention therapies, more specialists, more surgeries, developmental delays, etc. Even in the best hospitals with all the available treatment, sometimes that isn’t enough to save the baby. Some are simply too early, too small, or too sick.

The other unseen effect is what happens to the parents. Seeing your child hooked up to wires, unable to breathe on their own, fighting infections, needing surgery… these things take a toll. The rate of post partum depression is up to 70% in NICU moms, compared to just 16% in the general population (Graham’s Foundation study). PTSD is also a concern, with 53% of mothers and 35% of fathers developing it (Pediatrics Journal).

The final effect of prematurity is the What If syndrome, as I like to call it. It starts out with self-blame at the early arrival of the baby: what if I hadn’t had that cup of coffee each day? I know it was within the limits of caffeine, but what if I hadn’t? What if I had eaten more fruit and vegetables? What If syndrome then morphs into a trip through all the horrible things that can happen in the NICU: What If the baby catches a cold? What if the baby gets an infection? What if the baby has more desats and bradys? If the baby comes home, What If syndrome likes to go nuts: What If the baby stops breathing at night and we don’t know because there’s no monitors? What if someone comes over and they are sick and then the baby gets sick? What if the baby isn’t catching up to their milestones? What if they aren’t eating enough? What if we end up back in the hospital?

The final question that I’ve seen other Preemie moms deal with is: What If it happens again? The cause of many premature births isn’t known. Sure, I had preeclampsia and HELLP syndrome and those are probably listed somewhere as the cause of delivery. But how did I end up with that? Could I have done something to prevent it? No one knows. Aspirin looks to be a big help in delaying preeclampsia, but it doesn’t always work. The same goes for things like incompetent cervix, premature labor, early water breaking. No one knows why these things happen. There are some treatments to help, but nothing is guaranteed.

Prematurity can happen to anyone. I’m so glad that we had such a good outcome (even with our 3 months in the NICU and the hydrocephalus diagnosis and surgeries). There are many people who aren’t as lucky. And I’m glad that I’m working toward being able to care for those babies (and parents) who find themselves in the world of the NICU.

Little Miss Minion and the Return to the NICU

As you probably are aware of by now, I volunteer in the NICU as a member of the parent support group. There are several facets of what we do, such as fundraising for activities, visiting moms on hospital bedrest, and hosting events for parents. The part that I usually do is doing a unit visit. I walk through the unit and drop off welcome bags for newly admitted families and talk to parents who are in the unit about how they are coping. This week, I volunteered to cover the weekly dinner we host for the parents. We use a conference room just outside the unit and it’s a nice place to relax, have a good meal, and talk to other parents who are in the same boat. I don’t usually get to do these because of my class schedule, but someone was sick and no one else could cover it. I remember how much Mr Minion and I looked forward to these dinners and I couldn’t let it get cancelled.

The only catch was that I would have to bring Little Miss Minion with me. Mr Minion was working late. I packed up the iPad and some coloring books to keep her busy and we went to the NICU after I picked her up from daycare. Little Miss Minion was very well behaved and so excited to be “helping the babies” at the NICU.

Once we had all gotten plates and were settled, I introduced myself and gave the short story of our NICU journey. It’s a lot different telling a story that involves pediatric brain surgery when the kid in question is sitting next you playing on an iPad. People hear the words “brain surgery” and “brain damage” and they picture a very sick kid. When I introduced Little Miss Minion as the kid in my story, the parents were shocked. Some of them are going through rough journeys of their own and I hope seeing LMM gave them a little hope.

LMM stayed pretty quiet through the dinner and the talking. We all shared our stories and struggles, as well as some of the funny things that happen. I talked about the time I fell sleep while pumping-I put on an episode of Good Eats to keep myself awake during my 2AM pumping session and made it about five minutes in before falling asleep for about an hour–that story always breaks the tension and helps people relax.

I sometimes get that weird feeling that I’m *meant* to do something and I got that feeling before I accepted covering the dinner. As people started to open up and share, one of the dads told his story. His daughter was born at the same weight as LMM and has been there for over 200 days. Much like us, they had a severe infection that resulted in dramatic damage–LMM ended up with meningitis, sepsis, and hydrocephalus. His daughter ended up with a mystery lung ailment that damaged her lungs.

I ended up talking to this dad for about forty minutes after everyone else left. His daughter weighed the same amount at birth as LMM and was a week earlier. He was very affected by seeing another Preemie who survived some pretty dire stuff and couldn’t believe that she’s had five brain surgeries. I think he needed that spark of hope, of seeing the light in the tunnel for his own daughter. He showed me pictures of his daughter and I showed him similar pictures of LMM.

I think I’ll have to start volunteering to cover these dinners more often. It was nice to see the parents in a less tense environment (the bedside is sometimes an awkward place to try to talk about the stress of the NICU). I think LMM had fun too, even though she didn’t get to see the babies.

2 Year Shuntiversary

Tomorrow marks two years since Little Miss Minion’s last surgery. This is the longest that we have gone between surgeries (*knock on wood*), and she has changed so much since the last one. Before her last surgery, she still wasn’t really talking and was having some minor gross motor issues. The shunt malfunction that caused her last surgery was a slow breakdown, and I suspect that it was putting pressure on the part of her brain that controls speech. She is a chatterbox now, and enjoys singing to herself and talking to her toys and anyone who will listen.

Another interesting facet of this milestone is that she is old enough now that she will remember any future surgeries that she needs to have. She will notice the shaved patch of hair, and will remember the feeling of having stitches. I hope that she will remember the specific feelings of shunt failure, so that we can compare any headaches to the Shunt Headache. I have been told that Shunt Headaches are subtly different from regular headaches, but how can I explain this to a little kid? How do you explain to the kid that you have to go to the hospital for a lot of tests because they have a headache? What about when you (the non-shunted person) say that you have a headache? If the hydro kid understands the severity of THEIR headaches, how do you explain that YOURS are just inconvenient and don’t require a hospital visit?

While this Shuntiversary reminds me of the last five surgeries, its also a great statistical milestone. Half of all pediatric shunts fail within two years. After that, the failure rate is much lower. This is a great thing for Little Miss Minion and I hope we make it a long time without another brain surgery.

Hydrocephalus Awareness Month

September is Hydrocephalus Awareness Month.

For those who don’t know, my daughter Little Miss Minion was born at 28 weeks. While in the NICU, she developed an infection that led to meningitis and sepsis. As a result of the meningitis, she developed a condition called hydrocephalus.

Several weeks after she was out of the woods from her infection and complications, I remember getting a message from the charge nurse one day when I was at work that said they had done a scan (they did brain scans periodically to make sure she didn’t have a brain bleed, another complication of premature birth) and the scan had revealed enlarged ventricles. Of course, I immediately googled enlarged ventricles and found articles about kids dying in Africa with heads the size of watermelons. Needless to say, I hightailed it to the NICU to find out what was going on with my baby. They told us that a specialist was coming to talk to us about our options. I was convinced that there was a strong chance that LMM would end up like those kids in Africa.

The specialist they sent turned out to be an incredibly talented neurosurgeon from a nearby Children’s Hospital. There aren’t many pediatric neurosurgeons in the country, and there were none in the medical system we used. That’s a story for a different day.

The neurosurgeon explained that LMM had something called hydrocephalus. He told us that, because of the illnesses she had overcome, her brain had become damaged and was no longer draining itself the way it should. He told us about cerebrospinal fluid and how your brain creates this liquid inside areas called ventricles. How something happened inside LMM’s brain and the liquid wasn’t draining. Instead of flowing around her brain and being reabsorbed, it was pooling and building up, putting pressure on her brain.

As if this wasn’t bad enough, he went on to explain that the only way to fix this problem was to surgically implant a device called a shunt. There would be a small tube placed inside one of her ventricles that would drain the extra fluid into a pocket near her stomach, where it would be reabsorbed.

Her first shunt surgery took place when she was about eight weeks old and weighed around 4 pounds. Since then, she’s had four more surgeries.

The only experience I had with hydrocephalus was watching a Disney Channel movie starring Frankie Muniz called Miracle in Lane Two. It’s about a kid who wants to race these Build It Yourself race cars. The kid has spina bifida, and uses a wheelchair to get around. He also has hydrocephalus, and has a shunt malfunction during the plot of the movie. Having this as my baseline knowledge, combined with the terms “brain damage” and “brain surgery” plus the fact that no one could tell us what this diagnosis meant for LMM, we were incredibly worried for her.

Luckily, the brain damage was minimal (as seen on multiple MRIs) and it appears that her brain simply went around those areas to make new connections. We won’t know for sure, so we just have to wait and see if she starts having trouble later.

If you’ve stumbled on this blog by searching hydrocephalus, I want to tell you that you aren’t alone. Also, don’t google it. 🙂

The Next Goalpost of Milestones

Since Little Miss Minion starts pre-k in a few weeks, I figured I would go through the CDC milestones for 5 year olds and see how she’s doing. I posted a while back for the 4 year old milestones and she’s met all but one (catching a ball), so I wanted to see her progress toward meeting the next set. The following list is from the CDC’s website with my own notes after each entry.

Social and Emotional

  1. Wants to please friends-yes. She’s fairly good at sharing with others and plays with other kids at school.
  2. Wants to be like friends-yes. She likes to note similarities between herself and others, like hair color, shirt color, likes and dislikes.
  3. More likely to agree with rules-yes. Mostly.
  4. Likes to sing, dance, and act-yes. She constantly sings in the car and always gets up to dance whenever there is music. She is starting to frequently make up little storylines when playing with Mr Minion or myself, like “I’m eating soup (out of my pretend ice cream cup) because its cold outside. Brrr.”
  5. Is aware of gender-yes. She mixes them up sometimes (mostly for indeterminate things like a stuffed animal or cartoon character).
  6. Can tell what is real and what is make-believe-mostly.
  7. Shows more independence, such as visiting a next door neighbor by themselves-have not tried this, as I do not trust her to be outside near the road we live on by herself. She will happily go and talk to neighbors if they are outside.
  8. Is sometimes demanding and sometimes very cooperative-100% yes.

Language and Communication

  1. Speaks very clearly-I don’t generally have trouble understanding her, but I think other people sometimes do.
  2. Tells a simple story with full sentences-yes, I’ve been happy to see that she almost always speaks in full sentences (it’s the English teacher in me).
  3. Uses future tense-yes. She likes to explain what we are about to do. “We are going to have dinner and after that, we can watch a movie.”
  4. Says name and address-she knows her first and last name, but only remembers her middle name about half the time. We don’t really use it, so I am not surprised. We never say our address either, so I guess we need to work on this one too.

Cognitive

  1. Counts 10 or more things-yes.
  2. Can draw a person with at least six body parts-not frequently. She usually gets a head, eyes, mouth, and body, but sometimes adds feet, hands, shoes, fingers, etc.
  3. Can print some letters or numbers-she can reliably trace all her letters, but can legibly write several on her own. She can recognize all the numbers and letters. This is one that will we will be working with her on this year.
  4. Copies a triangle and other geometric shapes-yes-when she feels like it. This will also be something that we work on this year.
  5. Knows about things used every day, like money and food-yes. She got really excited the other day because I had some change in the cupholder of my car. “You have MONEY, Mama!!”

Movement and Physical Development

  1. Stands on one foot for 10 seconds or longer-no
  2. Hops, may be able to skip-can definitely hop. I don’t think I have ever seen her skip
  3. Can do a somersault-she is close—I’m worried about the rolling part putting pressure on her shunt and causing pain.
  4. Uses a fork and spoon and sometimes a table knife-yes, she has started requesting a knife to cut her own food.
  5. Can use the toilet on her own-yes.
  6. Swings and climbs-yes!

All in all, I think we are in pretty good shape to start pre-k!

Little Miss Minion’s Due Date

Today was Little Miss Minion’s due date, back in 2015. We stopped using this date to adjust for her prematurity once she turned three, but I still have a wistful feeling whenever this date rolls around. What would she be like if she wasn’t born so early? Would she still have gotten sick in the NICU? Would a slightly more advanced immune system have fought off the infection and kept her from developing hydrocephalus? Would she have a little brother or sister by now, if my pregnancy with her hadn’t been so complicated?

May 14 is Little Miss Minion’s day. It is the day we celebrate her birth, however early and terrifying it may have been. August 3 is another happy day—her Gotcha Day—the day we brought her home.

August 6 is my personal day of remembrance and mourning. Of mourning the loss of what my pregnancy was “supposed” to be. Of scrapping Birth Plans A-Z in favor of Birth Plan-Nobody Dies. Of spending my first nights as a mother in a hospital room, dazed from the magnesium that was keeping me from having strokes and/or seizures, with my baby on a different floor of the hospital. I mourn the day I was discharged from the hospital without my baby, who was too small to come home yet. I mourn the nights I spent that summer when she was in the NICU, pumping every three hours and falling asleep with the machine on as I watched episodes of Good Eats to try to stay awake.

But I remember, too. I remember how tightly those unbelievably tiny fingers and hands gripped my thumb. She would wrap her entire arm around my thumb and just grip it when I would kangaroo her (kangarooing is skin-to-skin contact between parent and child). I remember how she was forever pulling her nasal cannula out of her nose and the two tubes would come down by her mouth and make her look like a tiny vampire. I remember how hard she fought the infection, sepsis, and meningitis. I remember standing by her crib all night after she came out of surgery for her first shunt placement, determined that if she woke up from the anesthesia that night, she wouldn’t feel alone. I remember the feeling of elation as we brought her home. I remember being so proud of how hard she worked in physical therapy and speech therapy.

 

And I remember how, when I put her to bed, she grabs me for a huge hug and says “I love you, Mama.”